I have just joined this forum, I'm in the U.K.
Mum was diagnosed with Rhumatoid Arthritis approx 2.5-3 years ago. She is now treated by Retuximab Infusions, but previously had Methatrexate. Her breathing has been bad for many years but deteriorated since the RA, so she has been referred to a specialist at a Centre for Excellence - this appointment is in 10 days time.
In November last year Mum was hospitalised following flu like symptoms that left her breathless. During this stay her Dr said she had COPD/Fibrosis and discharged her after 10 days on 10litres of o2 for 4 hours a day. - no follow up care arranged.
She has continued to deteriorate and struggle with her breathing, so, concerned about her I brought her to stay with me. I was able to monitor her o2 levels on an oximeter after bringing one home and was horrified to learn her average was 84%. I phoned for advice and this led to her being admitted by ambulance. 4 days on she's still in hospital but this time we have been told that she has ILD, probably caused by the RA, and that this was diagnosed in Sept 2015, though this wasn't communicated to my Mum. She has a new o2 prescription of 4litres 24/7. Her typical stats are 80/65 BP, and 87% o2 levels.
Her breathing is not improving. When she's sat, it's manageable but as soon as she moves her hands go blue and her breathing is awful.
Is there anyone else out there who can identify with Mum and I s this typical of someone who is 'living with ILD' or someone who is 'deteriorating '? Honest and to the point responses would be appreciated.